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Author Topic: 28 in NYC - just tested positive  (Read 17137 times)

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Offline +nycguy

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28 in NYC - just tested positive
« on: June 24, 2009, 12:19:56 am »
Hi everyone,

I'm 28 years old and live in NYC. I just found out on Saturday that I am positive. I still have a hard time even typing that!

I'm doing WAY better than my first two days of finding out. Those first 48 hours were horrible. Thoughts of a horrible death, loneliness, and even random thoughts of suicide were just about all I could think of. I found another forum the other night and came across this one today. I have a good person who is really supporting me, but I still really want to talk to other pos people and learn more. The more I read other people's stories, the closer I am getting to accepting it all.

Right now what I'm having the biggest problem with it not knowing how/when to tell my "partner." I don't even know what to call him. We are just casually dating, though he is the only guy I am having sex with. Unfortunately, we did have unprotected sex about 3 weeks ago. We talked a lot after that how we cannot do that. I don't know how to now go and talk to him about this, but I know I need to do it. Originally, I was supposed to get my confirmatory results on Thursday, so I told him I would stop by Thursday evening and was going to talk to him then. But I got a call today that my results won't be back until Monday. This just frustrates me because I don't know what to do now. I cannot see him or even really talk to him because I'll just feel guilty not telling him. So now I have to cancel my visit with him until Monday?? Am I being horrible by waiting for the confirmatory results or is that the right choice. I am so worried about him. He's the sweetest nicest guy ever, and - while I know the virus doesn't only infect "bad" people - he is just SUCH a good guy, I worry about him. He is a doctor, so I feel like he'll be able to grasp and understand, but I'm afraid of him hating me or hating himself or... I basically hate that he has to now go through a long long wait time of agony.

Wow, my post is long! Sorry. I honestly could write so much more, but I am going to stop. I guess this means I have a lot to say still and maybe should find a group or something...
My blog : http://ze-gamur.blogspot.com/

03/08: Negative
06/09: Positive
07/09: CD4=483 , VL=45805

Offline 38DutchGuy

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Re: 28 in NYC - just tested positive
« Reply #1 on: June 24, 2009, 05:26:31 am »
Hello NYCGuy,

I am sorry to  hear you tested positive and that you feel so lost right now. I know the feeling. I just found out three weeks ago and it feels like ages. It is a big shock but no death sentence. REMEMBER that. With pills when you get to that point you can still live up to a hundred.

I found out cause I was sick and the doctors kind of forced me in to taking the test. So before I had the result I had a week to think about it and prepare myself for it. I am not stupid so when the wanted the test I got worried. it appeared to be HIV+ Damn. Cause my dc4 count was so low I had to start on pills already straight away. At least I get it all at the same time. My partner tested negative so we are happy about that. He supports me really well. We just have to find a way of having sex again now. we had unprotected sex for nine years and what they tell me the infection I have is pretty old already. He is really lucky.

You "boyfriend" has to know as soon as possible. You cannot have unprotected sex ever again. Not even if he is positive too. But you will learn that on the internet too. If he freaks out about you being positive he is not worth being with you but if he is a doctor himself he knows lots about it and won't have a problem. Don't avoid seeing him. He'll know something is wrong. Be honest and open to him. Is my advice but what do I know? I only told 4 friends at the moment and have no idea how to tell my parents. Trying to find a way and time for that.

Let us know how your story goes on.

Good luck
Peter

Offline 38DutchGuy

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Re: 28 in NYC - just tested positive
« Reply #2 on: June 24, 2009, 05:36:01 am »
Hello NYCGuy,

Write me an personal message so I can send you my email adres so we can exchange experiences.

bye
Peter

Offline GNYC09

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Re: 28 in NYC - just tested positive
« Reply #3 on: June 24, 2009, 07:28:39 am »
+nycguy,
My heart goes out to you and I (and probably everyone here) understand how difficult it a process it is to come to terms with the diagnosis.  I was diagnosed early April and am still adjusting. One thing that has helped me, which you may also find useful, is to join a group therapy group.  I know there is a "Newly Diagnosed Group" starting at the GMHC in a few weeks (they also offer 1-on-1 counseling).  As for your boyfriend, he sounds like a good guy that is capable of understanding your situation.  Have hope because things do get better and this board is a great resource.
Be well.

Offline Ann

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Re: 28 in NYC - just tested positive
« Reply #4 on: June 24, 2009, 07:54:20 am »
Hi +nycguy,

It sucks that you have to wait until next Monday to discover the result of your confirmatory Western Blot test. Until you have that, you cannot really consider yourself as hiv positive. The antibody tests can and do sometimes return false positive results. We have a very recent thread where that's what happened - click here to read.

You say you had a long talk with your current "partner" about how you shouldn't have barebacked - so maybe you can remind him of your talk and say you got to thinking and decided to test, but your results won't be in for a week. It would end the agony of keeping it from him while not necessarily telling him of your preliminary results. Because that's exactly what they are - preliminary - not definite nor conclusive. That's what I'd do in your shoes.

Contrary to what Peter (38DutchGuy) says about NEVER having unprotected intercourse again, that simply isn't true. While it IS true that condoms are a must if you're having sex with men of negative or unknown hiv status, poz people can and do bareback with other poz people. I'm in a poz/poz relationship and we don't use condoms - but we're not having sex with anyone else either. There are plenty of other people on these forums who do not use condoms with other pozzies. Some strictly serosort, and some also have intercourse with neggies, but with condoms. There's plenty of information on this aspect of poz life here in the forums, but let's not put the cart before the horse. There's no point in going into detail until we know for sure whether or not you even need to know.

Hang in there - I know it can't be easy to wait so long. When I was diagnosed I had my WB confirmation within 24 hours of my initial positive antibody result and I've always realised how lucky I was. Too many people have to wait ages and I feel for you.

I would like to ask one thing of you - until you have your confirmation one way or the other, please post only in THIS thread. Thanks!

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline +nycguy

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Re: 28 in NYC - just tested positive
« Reply #5 on: June 24, 2009, 08:36:21 am »
Wow, I didn't expect so many responses.

Thank you everybody. Last night I came home and was feeling pretty good about things and for some reason when I woke up today, I'm just really down. I know that is probably going to be the case, it's just that I feel more down today than I had Monday or Tuesday. I'm hoping to shake this off.

Anyway, thank you for all the advice. Ann, I am afraid of holding onto any hope of it coming back negative just for the sheer fact that it will hit me even harder on Monday. Although, to be honest, I still have a piece of me that keeps saying it is a mistake... but I think that is just the denial. However, I do like your idea of how to tell my partner. I know he'd want to have sex when I see him, so maybe I'd just say that we shouldn't until my results come back? I just want to tell him because I'm so worried for him and I know he has a right to know ASAP.

It is encouraging to hear your story Peter. In my mind, I just imagine never having a guy touch me again. I still feel that way right now, but I think the more I hear others in relationships, the more it will help me.

And GNYC09 - it is great to hear from someone else in NYC. I don't know why that makes a difference, but for some reason I feel comforted. I have contacted GMHC and left a message for them. I'm waiting to hear back. Have you gone to one of their groups before?

Thank you again for all the responses. I'll continue to read other people's posts. I'm trying to think if I should take a break from everything right now since I am really down or if reading more will bring me back to a normal place.
My blog : http://ze-gamur.blogspot.com/

03/08: Negative
06/09: Positive
07/09: CD4=483 , VL=45805

Offline mecch

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Re: 28 in NYC - just tested positive
« Reply #6 on: June 24, 2009, 08:56:40 am »
Wait for confirmation and then if positive, or negative, have a talk with your beau. Courage.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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Re: 28 in NYC - just tested positive
« Reply #7 on: June 24, 2009, 09:25:14 am »
+nyc, I can empathise with being afraid to hold on to hope - but - please try to keep an open mind. Prepare, yes, but keep an open mind. False positives do happen.

It might be a good idea to take a break from reading about hiv - at least for a few days. Nothing you read will affect Monday's outcome one way or the other and if you do unfortunately get a poz confirmation, you'll have plenty of time to learn about stuff. Jumping the gun is only going to make you more anxious - and could possibly make you feel unwell too. They don't say "worried sick" for nothing. Do all the things you would normally do in a day - because after all, life carries on post-diagnosis and there's no reason to put your life on hold now either.

Hang in there, and try to keep an open mind. Good luck.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Miss Philicia

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Re: 28 in NYC - just tested positive
« Reply #8 on: June 24, 2009, 12:33:41 pm »
You cannot have unprotected sex ever again. Not even if he is positive too. But you will learn that on the internet too.

Care to elucidate on this point?
"I’ve slept with enough men to know that I’m not gay"

Offline Ann

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Re: 28 in NYC - just tested positive
« Reply #9 on: June 24, 2009, 03:34:40 pm »
Care to elucidate on this point?

DutchGuy's only been diagnosed for three weeks now - he's obviously not really someone who should be giving sex advice at this point. It looks to me like he's been reading scare-mongering sites that say reinfection is something that happens every day to anyone poz who dares bareback with another poz. ::) He'll learn.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Inchlingblue

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Re: 28 in NYC - just tested positive
« Reply #10 on: June 24, 2009, 06:46:38 pm »
I really don't get this "confirmatory" test thing. Is this only when the ELISA is inconclusive? When I went to get tested (because my partner had tested positive), I happen to be in NYC and I went to a city clinic, got tested anonymously and in less than 1/2 an hour I was told I had HIV, voila! No confirmatory test, no 24 hours, no "next week," in 20 minutes they knew. Welcome to the Dollhouse.

As far as unprotected sex with others who are poz, Ann, you are in a committed relationship, right? Or at least that's what I remember you saying. Meaning your chances of acquiring other STDs are essentially zilch. Why would anyone who is poz and not in a totally committed relationship (i.e. someone single with an active sex life) want to expose themselves to chlamydia, gonorrhea, Herpes, HPV (anal warts!), syphilis, Hepatitis A, B and C, etc  etc etc etc by not using a condom?? All these STDs are bad enough if you have an HIV-free immune system but they are way worse if you have HIV.

And if you are having unprotected sex with others who are poz but they are essentially strangers (not exactly uncommon when you are a gay man, having sex with strangers) how do you know they are taking their meds and undetectable and have no STDs? And even if they are undetectable, HIV has been found in semen at levels that can be transmitted, even when someone has undetectable levels in plasma.

As far as I'm concerned unprotected sex should only be between two people who are in a completely committed relationship, whether they are both negative or both poz. Serodiscordant couples should use condoms, even if the poz partner is undetectable.

In the loverly words of Miss Winehouse, "Make me want to do it bareback and I say 'No, no, no.'"
« Last Edit: June 24, 2009, 11:23:57 pm by Inchlingblue »

Offline HereIAm

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Re: 28 in NYC - just tested positive
« Reply #11 on: June 24, 2009, 09:54:47 pm »
Welcome +NYCGuy,

I am so sorry you are positive and happy you are here.  Seek the support.  Take care of your self.  Get all the information you can.  And, know that this first period of time is really rough!  I think nearly everyone here can agree with that.

I wouldn't jump to very many conclusions.  But, having known for less than one year, here is what I have learned and might offer:

1.  Know your numbers.  Especially CD4 and VL.

2.  Consider starting medicines as early as possible.  But, carefully consider this and make this decision with your physician.

3.  Speaking of physicians... pick one.  make sure you can talk with him/her.  This physician needs to be seeing other HIV patients and have some experience.


4.  Work on the insurance/drug coverage issue.  Seek out help from an AIDS Service Organization.

5.  Consider seeing a therapist.

6.  Remember, this is just a disease.  You didn't deserve it anymore than people deserve diabetes or heart attacks.  It just is.

7.  Keep your chin up and have hope.  There are advances every day that make life a lot easier than it was in the earlier days.

Finally, check back here frequently.   Know what is going on.  Be up to date.  And, write me privately if you need someone to correspond with.

Regards,
Tested Positive 10 Sept 2008.
24 Sept 2008:  CD 4: 23;   1%;  VL: 770,709
1st Oct 2008:  Started Atripla
4 Dec 2008:  CD 4: 145; 8%, VL: 209
1 March 2009:  CD 4: 91; 8%, VL: 49 (undet)
1 June 2009:  CD 4: 164; 11%, VL: 61
8 July 2011:  CD 4: 286; 17%, VL Undet
28 Oct 2011: CD 4: 346; 21%, VL Undet
2 Mar 2012: CD 4: 316; 20%, VL 6800 (probably an error)
12 Apr 2012: CD 4: 333; 21%, VL Undet

Offline Ann

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Re: 28 in NYC - just tested positive
« Reply #12 on: June 25, 2009, 06:23:19 am »

I really don't get this "confirmatory" test thing. Is this only when the ELISA is inconclusive?


Any positive antibody (ELISA or EIA) is supposed to be confirmed with a Western Blot test. They probably did do one on you at some point. Maybe they initially assumed yours was correct as your partner had also tested poz. Also, depending on what type of test is used, if all or most of the bands show poz, then it's pretty much a foregone conclusion and the WB is a formality more than anything else. This is what happened to me, although I wasn't told that until my WB came back poz (she said "we knew, but had to make sure"). If you want to know more about the tests, see the Testing Lesson


Why would anyone who is poz and not in a totally committed relationship (i.e. someone single with an active sex life) want to expose themselves to chlamydia, gonorrhea, Herpes, HPV (anal warts!), syphilis, Hepatitis A, B and C, etc  etc etc etc by not using a condom?? All these STDs are bad enough if you have an HIV-free immune system but they are way worse if you have HIV.


I don't know, but I do know we have members here who serosort and bareback with other pozzies they aren't necessarily in a relationship with. You'll have to ask them how they feel about the risk of getting one of the other STIs. The point of what I wrote was that hiv isn't a real concern when barebacking with other pozzies.

If you read my post to +nyc, you'll see that I said to him, "There's plenty of information on this aspect of poz life here in the forums, but let's not put the cart before the horse. There's no point in going into detail until we know for sure whether or not you even need to know." and this is partially what I was alluding to. We can cross that bridge with +nyc if and when he comes to it.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Inchlingblue

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Re: 28 in NYC - just tested positive
« Reply #13 on: June 25, 2009, 01:13:55 pm »
Any positive antibody (ELISA or EIA) is supposed to be confirmed with a Western Blot test. They probably did do one on you at some point. Maybe they initially assumed yours was correct as your partner had also tested poz. Also, depending on what type of test is used, if all or most of the bands show poz, then it's pretty much a foregone conclusion and the WB is a formality more than anything else. This is what happened to me, although I wasn't told that until my WB came back poz (she said "we knew, but had to make sure"). If you want to know more about the tests, see the Testing Lesson

I hear what you're saying but I know that in New York, the city health clinics offer anonymous testing with results in 1/2 an hour (I'm pretty sure they advertise it that way in certain places). They didn't know in my particular case that my partner (the only person I've ever barebacked with, how lucky can you get? lol) had tested poz so that wasn't a part of the equation.

Unless they were able to do a Western Blot on the spot while I was there, they would have no way of reaching me if they did one at a later date because I was there anonymously.

I guess if the ELISA is conclusive (with most of the bands showing up) then they consider it definitive because there was absolutely no talk of any kind of confirmation needed. They told me very definitively that I had HIV. Maybe this is a new and more reliable version of ELISA? All it took was a finger prick's worth of blood.
« Last Edit: June 25, 2009, 01:17:49 pm by Inchlingblue »

Offline Ann

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Re: 28 in NYC - just tested positive
« Reply #14 on: June 25, 2009, 01:58:31 pm »
There are several different types of ELISA testing that will give results in a half-hour/twenty minutes. BUT... if the test is positive, it still has to be confirmed with a WB. Why the clinic you went to didn't inform you of that, I don't know. Maybe they assume that when you seek out an hiv doc, that the test will be re-run. And it usually is when the person says they've tested poz with a rapid test. They'll run an ELISA alongside a WB when they take your blood to do the CD4 counts etc. A doc (a good one, anyway) won't just take a patient's word for it that they tested poz on a rapid test at an anonymous testing center. Whether or not the patient is informed about this follow-up testing probably depends on the idividual doctor's style and policies.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline +nycguy

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Re: 28 in NYC - just tested positive
« Reply #15 on: June 29, 2009, 08:58:57 am »
Hi everyone, and thanks for the continued responses. I had decided to take a break until today with everything because I was just getting very overwhelmed. I also had a LOT of things going on last week and through the weekend, so I tried to just stay focused. Overall, I had a really good last few days...but I also think I pushed this all out of my mind so much that today will be a lot to handle.

Updates:
Ann, thank you again for the advice on how to talk to my partner. I went over Wednesday night and we talked openly and honestly. He works a long day today and is on call for part of the night, so depending on when he gets out I am going to go over. He says that our decision to bareback was mutual and that I'm not at fault for it. I know it's easier for him to say that now, so we'll see how things go tonight. So far, though, he has been very supportive.

I also told another friend Friday night. I had originally not wanted to tell anyone else until after my results today, but since my best friend couldn't come with me today (he has a business day-trip that he couldn't get out of), I told another person. He has also been very supportive and is going with me today to help make sure I ask all the questions I need to ask and help me remember what they tell me.

Along with everything else that is going on, I had a final interview for a job on Friday and literally just heard (as I was typing this) that they would like to extend me an offer. I'm so all over the place with emotions right now. Today is going to be such a weird day.

I'll report back to you all after my results come in. In the meantime, if you have any advice on things I should ask today, please let me know. I'm not going to a doctor today, it is an organization called Harlem United who apparently can also help with other services. I don't know how it will work for me to get a doctor (if they have them on staff there or just help me locate them), so we'll see. But again, if there is anything you can think about, please let me know.

Thank you all again
My blog : http://ze-gamur.blogspot.com/

03/08: Negative
06/09: Positive
07/09: CD4=483 , VL=45805

Offline Ann

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Re: 28 in NYC - just tested positive
« Reply #16 on: June 29, 2009, 09:12:48 am »
+nyc,

Good luck today. I'm glad you have a supportive friend to go with you. And no matter what the outcome, take that job! Hiv isn't the end of the world and you'll be ok. You'll just have to trust me on that.

There might not be much to ask today - you might even be pleasantly surprised by a negative result. If the result is poz, there might not be much to ask today unless they've also taken blood for viral load and CD4 counts. Ask if they have and ask what your numbers are if they did. Write them down! Make sure you take a small notebook and pen with you. You could ask for a referral to an hiv doc and find out what support groups are available.

Good luck and keep us posted. And congrats on the job offer! They're getting hard to come by these days.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline +nycguy

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Re: 28 in NYC - just tested positive
« Reply #17 on: June 29, 2009, 05:56:27 pm »
Okay, well, it is official now. I got my WB today and it came back positive.

I go in tomorrow to get my blood work done for my VL and CD4 count.

Tonight, I have to go tell my partner. We'll see how that all goes.

I just told another friend tonight. That made it easier for me, because we are very close and it was hard to hold it back from her.
My blog : http://ze-gamur.blogspot.com/

03/08: Negative
06/09: Positive
07/09: CD4=483 , VL=45805

Offline Inchlingblue

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Re: 28 in NYC - just tested positive
« Reply #18 on: June 29, 2009, 06:38:24 pm »
You'll be OK, it sounds like you have a good head on your shoulders.

As far as practicalities, does the new job offer health insurance? The next step is what you are already doing, which is to see what your counts are. Once you know that, you'll know better how to proceed.

There is every reason to believe everything will be fine.

Big hug.

Offline +nycguy

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Re: 28 in NYC - just tested positive
« Reply #19 on: June 29, 2009, 07:39:29 pm »
It does offer health insurance. They want me to start Weds, so I'm hoping to have all the paperwork then.
My blog : http://ze-gamur.blogspot.com/

03/08: Negative
06/09: Positive
07/09: CD4=483 , VL=45805

Offline Inchlingblue

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Re: 28 in NYC - just tested positive
« Reply #20 on: June 29, 2009, 07:47:40 pm »
What's your insurance situation now, do you have COBRA or insurance from a current employer?

Offline GNYC09

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Re: 28 in NYC - just tested positive
« Reply #21 on: June 29, 2009, 08:03:40 pm »
+nycguy,
I'm sorry to hear the news of your results.  Take your time to get used to this new facet of your life.  Hang in there as things do get better.
Be well.
p.s. congrats on the job offer.

Offline Andy Velez

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Re: 28 in NYC - just tested positive
« Reply #22 on: July 02, 2009, 08:34:43 am »
Hey +NY,

As tough as it is to get confirmation, perhaps it's also something of a relief to have the question about your status resolved. Now you can get on with taking care of yourself and doing the things that are going to help to keep you healthy. Including going ahead with your new job.

You've got some good friends, you have a new job and you're having your numbers checked.  Those are all important and good things to have in your life. As enormous as your newly established HIV status may seem to be right now, gradually it's going to settle into being a part of your life and by no means all that your life is about. It is important that you have a doctor with whom you can form a good partnership. Fortunately here in NYC there is a choice of knowledgeable professionals from which to choose for someone right for you.

You've already gotten a sense of the support available for you here. You're always welcome to ask questions about anything you want to know and to discuss anything that's on your mind.

Onward, buddy.

Cheers.

 
Andy Velez

Offline +nycguy

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Re: 28 in NYC - just tested positive
« Reply #23 on: July 02, 2009, 05:28:04 pm »
To start, I feel like I'm not contributing anything and all I do is come here to vent/complain/ask for support. I hope that changes...

I got my CD4 count this morning, but my VL wasn't in yet. 483 (at least, from what I can remember. I wasn't given the lab results yet, a medical practitioner gave them to me since the doc wasn't in yet). I really wasn't ready for a number that low. I'm a bit concerned but am going to try to be patient for my VL results (July 16 I go back in).

How bad is that? I feel like I'm so close to 350 that I'm not going to have much of a decision (or time to make one) about meds. I'm really bummed about the whole thing, but like I said, I'm also trying not to stress about it too much (which is almost impossible).
My blog : http://ze-gamur.blogspot.com/

03/08: Negative
06/09: Positive
07/09: CD4=483 , VL=45805

Offline Inchlingblue

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Re: 28 in NYC - just tested positive
« Reply #24 on: July 02, 2009, 07:26:39 pm »
483 is a very decent number, do you know what the CD4% is?

Based on that number (483), at least you have some time and it's not like you had to go on meds yesterday. There are people who's first count is under 200, that's when you usually need to act fast and be more concerned.

You might decide to go on meds since so many of the latest studies indicate that starting between 350 and 500 makes a big difference with long term outcome and general well being but, again, it's not like there is a major rush for the moment.

Also, as far as CD4s, since they can vary so much even from hour to hour on any given day, it's good to see what the trend is and not go by just one test.

For now, you still need to know your VL but it doesn't appear that you are in any sort of "danger zone" based on that CD4 count.

Offline +nycguy

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Re: 28 in NYC - just tested positive
« Reply #25 on: July 02, 2009, 11:49:01 pm »
Thanks for the response. As luck would have it, I ran into my doctor on the streets this evening. He tried calling me to tell me my VL but there was a mixup.

Anyway, he couldn't remember exact numbers, but he said it was between 45k-47k. I'm not really happy with that. I'm actually concerned, but he isn't. He said the same thing you (Inchlingblue) said about waiting to see a trend of numbers, rather than just focus on this one.

I don't know CD4%. He is going to contact me to tell me the VL count, so when he does, maybe I can ask for the CD4%. I don't quite understand that number, but I've seen others refer to it before too, and have read people say it's a better number to use than just the CD4 count.
My blog : http://ze-gamur.blogspot.com/

03/08: Negative
06/09: Positive
07/09: CD4=483 , VL=45805

Offline Ann

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Re: 28 in NYC - just tested positive
« Reply #26 on: July 03, 2009, 10:51:00 am »
Hi +nyc, sorry to hear you got confirmation.

Your numbers really aren't that bad at all. I've had results like yours in the past - I've been poz for over twelve years and I'm still not on meds. You can see my numbers history by going into my profile.

Opinion is divided on the subject of when to start treatment. Some say start early, others say wait. I've waited and it's not done me any harm. There's also been a huge improvement in the drugs available now - improvements that have come about while I've been waiting. I'm hoping for even more improvements before I need to start.

The bottom line is I totally agree with your doctor about giving it time so you can see a trend. Hang in there, you're going to be ok.

How's it going with your partner?

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline +nycguy

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Re: 28 in NYC - just tested positive
« Reply #27 on: July 03, 2009, 03:21:06 pm »
Ann,

I always appreciate your responses. Thanks again.

I'm trying to take everything into perspective and not stress out too much. I guess I have to realize I'm still so new to this all and I can't really "expect" things like "good numbers."

As far as things with the guy, he so far is negative (yay!) but has to go back for another test in about a month. He is also sticking around and, to be honest, it kind of freaks me out. I don't know what he wants from me because I can't offer much in a relationship right now. I want to have a talk with him about that ... I can't see us having sex anytime soon (if ever), and I'm not emotionally at a place to offer much either. We'll talk soon, but he is really being amazing and trying to support me as much as possible. I can't complain at all
My blog : http://ze-gamur.blogspot.com/

03/08: Negative
06/09: Positive
07/09: CD4=483 , VL=45805

Offline Andy Velez

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Re: 28 in NYC - just tested positive
« Reply #28 on: July 03, 2009, 06:10:43 pm »
Hey NYC Guy,

It sounds to me like you're pretty down on yourself right now. And speaking of yourself as if you're damaged goods with not much to offer to your friend or anyone else, including here for that matter.

Ease up on yourself, bud. Or if you can't do that, at least notice that you're being very self-critical right now. I hope that is just a passing stage. It's certainly a very common state of mind for many when first diagnosed to feel that way so for sure you aren't alone with this kind of reaction. Obviously your friend sees more to you than just a blinking sign over your head that says HIV!

Give him and yourself a break is what I suggest and trust there is more to you than this virus that's come into your life.

It's encouraging about your meeting unexpectedly with your doctor. It sounds like he has a good approach and will be someone you will be able to talk with and count on.

I don't know what else you're doing today, but I suggest you make sure that you do at least one thing today and every day that you really like. It doesn't have to be anything "big," just something that makes you happy and lets  you know that life is about more than this damn virus.

Meantime keep coming here as often as you want to and need to. That's what we're here for. And one of these days you may surprise yourself by finding you'll be lending support to someone else who needs it.

Cheers.
« Last Edit: July 03, 2009, 06:12:53 pm by Andy Velez »
Andy Velez

Offline +nycguy

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Re: 28 in NYC - just tested positive
« Reply #29 on: July 04, 2009, 09:36:59 am »
Andy,

Thank you so much. You guys are all so amazing. I am known to be pretty self-critical and have had self-esteem issues throughout my life. I know that is playing into things here. But I do also think this is a stage. Mainly, because I go back and forth from feeling this way so I think it will happen less and less.

I like the idea of doing something everyday that I like. I'm going to start doing that.

Thank you!!
My blog : http://ze-gamur.blogspot.com/

03/08: Negative
06/09: Positive
07/09: CD4=483 , VL=45805

Offline Andy Velez

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Re: 28 in NYC - just tested positive
« Reply #30 on: July 04, 2009, 09:49:37 am »
I'm glad to know that suggestion hit a responsive chord with you. Remember, every day something that you like.

Happy 4th to you.
Andy Velez

Offline Joe K

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Re: 28 in NYC - just tested positive
« Reply #31 on: July 05, 2009, 01:24:47 pm »
Hello Guy,

My name is Joe and I have been living with HIV for 25 years and I thought you needed to meet someone like me, right about now.  I've been following your thread and you have gotten some great advice and if you don't mind, I have some food for thought.  As I read your responses I can empathize with your situation, because you seem to share so many doubts, the same that I did, when I tested positive in 1985.  I know your head is spinning and your mind is darting in a new direction constantly.  I know how horrible you feel inside, like damaged goods and how you feel that you have let everyone who matters in your life, down, because you are pos.  I know how fearful you about your future because of what you do and do not know about HIV.  I know how intensive this can all be at times, so my first piece of advice is to just breath.  That's right, breath.  When you feel the pressure mounting, try to catch yourself and take a few deep breaths.  You will be amazed at how calming such a simple action can be.

The best things you can do for yourself, is what you are already doing.  You have a good support system, a doctor who appears to be very caring and a partner, all of whom, I hope, will be there for you in the future.  However, what you must realize and accept is the fact that you have been given life altering news.  You need some time to sort through what you feel and experience and all of that takes time and you, my friend, have all the time in the world.  It is not unusual for a newly diagnosed person to take a year or so to adjust to their diagnosis.  Trust me on this, you need to give yourself the time and permission to adjust to your status and whatever you need to do to adjust, is what you need to do.

I say this because you are hyper critical regarding yourself and that is terribly unfair to you.  I know you have so many fears and questions, but they can all wait, until you find yourself in a more stable place.  Everyone here has been where you are and each of us, remembers that first year, with it's challenges, but the point is, we each found our own path to acceptance and that is the path that you are now on.  What matters now is you.  You need to become your own best friend, to insure that you eat properly, exercise, have your health monitored and anything else that you need to adjust.  This is one time in your life when you must be selfish, because your future is at stake here.  You said you felt bad because all you do is vent here, but I understand that, because that is what you NEED to do, right now.

I could go on, because living with HIV has it challenges, but all of that can wait... until you are ready.  What is most important now, is that you realize that you are HIV positive and nothing more.  I don't mean to diminish your results, but you are so much more than any virus that you may have.  You are the same person you were yesterday, the only difference being that you are now poz.  Big difference, I know, but try to keep it all in perspective.  You are young, healthy, well-balanced, with people who truly care about you.  Take it slow and give yourself some time to adjust.  Do not worry about your counts or whether you need meds, or any of that, just breath.

I'll leave you with what I believe is key to success in living with HIV: belief in yourself.  I will not lie to you, you will have your challenges, but if you truly believe in yourself and develop the skills necessary, you will live a very long life, despite some stinking virus.  Yes your life changed, when you got your results.  Please don't let fear or hopelessness stop you dead in your tracks, to regain your life.  You have done nothing wrong and nobody deserves HIV, however, despite the infection, only you have the power to determine how you will live your life.  You must learn acceptance of things you cannot control, while forgiving yourself for whatever role you may have played in becoming poz.  You need to take care of you, while continuing to live your life and you must reach out to others, even here, when you feel the darkness closing in.

As with everyone who tests positive, you have begun a journey to acceptance of your HIV.  While I cannot tell you how your journey might progress, I know that I speak for everyone here, when I say, that we will walk with you on that journey and help in any way that we can.  Believe me, my friend, you have not found a forum here, but a family.

Welcome to the AIDSmeds family.

Offline +nycguy

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Re: 28 in NYC - just tested positive
« Reply #32 on: July 06, 2009, 07:44:19 am »
That was so beautiful. Thank you for all that you said.

I have really come to appreciate this forum as a place where I can come and just say whatever is on my mind. You guys have all supported this stranger, regardless of anything that I have said. This is truly a safe space.

Thank you is all I can say.

I know this is a process and I will get to a good place soon. I'm proud of the progress that I've made in just two weeks, and it does give me hope for the future.
My blog : http://ze-gamur.blogspot.com/

03/08: Negative
06/09: Positive
07/09: CD4=483 , VL=45805

 


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